Wednesday, December 29, 2010

My Dad arrived on the first Thursday in December: the day that Dubliners woke up to find their city looking like a newly iced Christmas Cake....for the first time this winter. I had warned him about the weather forecast, but he was determined. At 80 he's starting to think that his children fuss over him a bit too much. He was expected at a Go tournament in Cork (Go being a strategy
game a little like chess - only don't say that to Go players!) and he was determined to go. So early the next morning he disappeared through the snow clouds in his macho 4 x 4, and I waited in trepidation for news of his safe arrival: he does have a mobile, but only turns it on when he wants to use it. Of course he arrived safely and, like everyone else I know who visits Ireland, had the best time. It's the little things that make the difference: hotel staff who cleaned his car windows every morning, the local tourist information centre that opened up an exhibition specially so he could view it. He stayed another night on the way back, and told me how much this adventure meant to him, he saw beating the snow and ice as a real achievement. It's just as well that he was feeling so confident, as his arrival home in Wales was not a happy one. My brother had kept an eye on the house while he was gone, but disaster struck on the very day that Dad returned home - the water tank in the attic burst, brought down two ceilings and flooded the entire ground floor. This was what faced him when he arrived home late in the evening. Once again my brother stepped in to save the day and organised a team of people to get the house habitable by Christmas. This was very important to my Dad because.....I was due to stay at Christmas with the kids.

Meanwhile the snow melted and, like everyone else in Northern Europe, I hit the shops big time to get everything in before the bad weather set in again. Ice and snow storms were forecast for the third week in December but Christmas Eve - the day we were due to travel - was supposed to be the day the thaw set in again, so I wasn't too worried.

But as the days went by and the the weather got worse I started to wonder if this trip was going to be possible. Sure, the ferries were running, but I had to get to the ferry. Smiley is still without her buggy and I hadn't risked taking her out in the snow in her wheelchair. The day before,
another Thursday, was supposed to be dry and bright, but someone's crystal ball was on the blink cos the snow just kept on falling, and I just kept
getting more and more nervous - I've never eaten so much chocolate!

On top of everything else I had organised a photographer to take some portraits of myself and the kids to give to my family as an extra special Christmas present and, due to the snow, they were delayed. Finally, and fair play to him, he hand delivered them at 11.45pm...the only problem being that my alarm was set for 4.30am!

And so it was that I found myself following in my Dad's footsteps exactly three weeks later and heading off on a 6 hour journey in six inches of snow. It took me an hour to dig out the car and defrost it but we made the ferry and it was an easy crossing. I wondered how bad the roads in Wales would be: my brother told me they were gritted but I was still amazed when I drove off the boat to find that the surfaces were completely dry and clear of snow! I even ventured over the mountains to his village on St Stephen's
Day...and the kids got to go sledging with their cousins, for first time
ever.

Christmas Day was almost perfect. It did start a little earlier than I was hoping, but it was a very happy extended family who sat down to Christmas Dinner, cooked by everyone else - including Angel who made the stuffing. I even got my walk, and a couple of glasses of wine in later :)

Two days later the thaw began. Ireland was green again and 20 degrees warmer when we returned.

And so ended the family adventures in winterland, at least for now....

Thursday, December 23, 2010

Everyone seems to blogging about Christmas, so if I don't, you might think I'm not a fan, right? Well it's not my favourite day of the year, but I think it could be... and I know exactly how the day should go:

My
perfect Christmas would not start too early. 7am would be just about
right for an excited CD to come rushing in to wake me and show off all
his Santa stuff, then after a quick mug of strong coffee, we help Smiley
open hers.

Then Angel has to be woken for the maddest part of the day: the full-on assault on the Christmas presents under the tree.

This is our tree on December 19th. BTW I have no say in its styling!

By
the 25th, there is usually a big pile of presents and a mad frenzy
follows with wrapping paper, labels, and ribbon flying across the room
while I painstakingly try and slowly help Smiley to open her stuff. As I
have an aspie child in the house, there will be a candid assessment of
each present, "I like this!" "I'm not wearing this" and so on. Just as
well there's only me and his sisters to hear. We can work out something more tactful to put in the thank you letters later.

I
do like to go to Church on Christmas Day, even thought it means getting
dressed up - ideally in new clothes if you are in Dublin - and making
sure the kids have clean face and shiny shoes. Yes everyone looks to
see what everyone else is wearing, but it's just lovely to see all your neighbours and local friends on Christmas morning, and it's good for the kids.

Then
I'd like some quiet time. A couple of hours to clean up, play with the
kids and make phone calls, and maybe even pop onto the internet, just
to check if anyone else is around.

The
countdown to Christmas dinner would follow, the guests would arrive.
They could be any mixture of friends and family, I don't mind, so long
as they plan to enjoy the day. And I don't care what is on the menu for
Christmas Dinner, so long as it is cooked by someone else. In
48 years I have managed not to cook Christmas dinner and I have no wish
to start now! I'm happy to peel potatoes or make desserts, I just don't
want to have to stage manage the whole production.

After dinner, I'd love a walk, no really!

In
the evening, the kids would go to bed early and without arguing, so I
can vegetate in front of the telly with a glass of something nice.

I wouldn't even mind a dusting of the white stuff as it's Christmas (and yes I mean snow).
And the child in me would love a surprise: an unexpected visitor
perhaps. As an adult what I crave more than anything is good news, and
that's what I'd wish for all my friends, family and readers: some good
news to end the year in a good way :D

Monday, December 20, 2010

I woke this morning to low level chatter from
the room below where Smiley sleeps. Don't ask me what time it was, I
just go into automaton mode to find out why she can't sleep. Thirsty, check. Nappy, check. Temperature, check. Music, check. Positioning, aha! Smiley has a new
sleep-system - an arrangement of pillows and brackets, designed to stop her
wind-sweeping turning into scoliosis - except in her case it seems to be
a non-sleep system...once again I had to remove it and put her on her
side so she could go back to sleep. A better solution is obviously
needed, memo to self, add to list of phone calls when get up properly!

It turned into a bitterly cold but sunny day and the snow gods seemed to be gently
sieving snow over the city, which just made everything look pretty. A
little last minute Christmas shopping was on the agenda so off I went in my woolly hat and sun-glasses. All was going well until I got the regular daily text
message from Angel at 12.43..

Her: What's for dinner?

Me: What would you like?

Her: I don't know, something nice, today has been terrible.

Angel
is not normally given to dramatics, so I was a little concerned, but
she is a teenager and she hadn't mentioned any actual disasters, so I
just added her favourite dish to the shopping list and kept on going.

First home from school was CD and he literally bounded up the garden path looking like an extra from a Steven Spielberg. He waswearing these funny
little white cardboard specs: rainbow glasses borrowed from 6th class. I was ahead of him by about 5 minutes and grumbling about my lack of lunch, and he actually heard me and processed what I said - progress for a kid with Asperger's.

"Mum, I want a hot chocolate, but you can have something first as you are so hungry."

(note the empathy, but he's still needs to work on appropriate language!)

Smiley came in gently snoring in her wheelchair...so here's hoping she sleeps tonight.

Last to arrive was Angel, with a weary droop to her shoulders.
Apparently the teachers are increasing the workload, significantly.
This may not be a bad thing with her Leaving Cert exams only 6
months away. But my girl felt it was all far too much: I rarely see her like this - tetchy, miserable and angry - typical teenage behaviour perhaps? So I did the sympathetic Mum thing. I listened, gave her the good
laptop, lit a fire and provided mugs of tea whether she asked for them or not. Dinner
wasn't wanted after all, and now even Christmas is to be worked through not
enjoyed: that's how bad she felt. The only (short-term) solution she
could think of was snow. And I think she must have been doing a snow
dance when I wasn't watching, because within the hour the first flakes
began to fall.

This time the snow stuck, and while the radio resounded
with tales of traffic hell the world outside began once again to look
like a winter wonderland. Angel has rallied and is hopefully happy of a school closure tomorrow. Now at 11pm they're all asleep. Who knows what tomorrow will bring?

Tuesday, December 14, 2010

When I was six, I wanted to get married and have four children and live in a big beautiful house.

At eight, I wanted to run the country.

By the time I was ten, I wanted to be an author, or possibly a ballerina - this interest led to 20 years of bent toes.

When I was 12, I wanted to become an architect, and there's still a box full of my house designs somewhere to prove it. But they weren't very original :(

At 14, I wanted a boyfriend...

From 16 to 20 I wanted to be a singer. But I realised that Grade 6 singing and a girly voice does not automatically mean that you have the X Factor.

At 21 I joined a multi-national car manufacturer: Fired up by all the strong women at college, I got really ambitious and planned to scale the career ladder and run my own factory..

Fast forward a long time....today I am a carer, which was not in any of my dreams. But wait..I had a successful career, I have been married, I have three wonderful children, and one of them likes my singing. I run my own household in a house with an extension that I designed, and I have time to write.

Thursday, December 9, 2010

I have a dilemma and I don't know what to do. The problem? Smiley isn't smiling. Well not as much as usual anyway. Instead we have had whimpering and real tears :( Earlier in the week I had texts from the school to say they had to give her Calpol as she would suddenly get upset. I assumed it was constipation, the only thing that has really bothered my lovely girl since she was a baby. But as the days have gone by, I've realised that it might be something else. She is now on pain relief all day, which is not good.

This morning her face was all scrunched up when she woke, and it took a maximum dose of Nurofen for her to relax. Then she was chatty through breakfast, but now I hear that she cried on the bus going to school: perhaps I am a bad Mammy for sending her to school? You see she has a shopping trip (where the children 'choose' gifts and 'ask' to pay for them using a Big Mac voice recorder) and a visit to Santa today. Heaven for Smiley, who loves shopping centres.

If you are a regular reader you will know that Smiley has no speech (yet). She also does not point, so how can she tell me where she is hurting? Long term my (iPad-related) plans to improve her communication skills should help, but I need to know right now.

I have cancelled respite and plan to keep her off school tomorrow. I guess I'll take her to the GP, but what can he do apart from give her stronger pain-killers? My teenager has stopped smiling is hardly a useful set of symptoms. When she was a baby there was a team of people at the local children's hospital who checked everything, but even then she nearly died before one of her major problems was diagnosed. I'd be so afraid that there is something seriously wrong and I hate the thought of putting her through lots of tests. I'm going to watch her closely over the next few days - a great excuse for not doing housework, hooray! - and see if a pattern emerges.

Just heard by text that she is chatting and laughing again :D And the miraculous cure? Chocolate cake of course... Sadly though I still think there is something wrong.

Wednesday, December 8, 2010

I've rarely seen a day dawn so white and bleak and wintry. Perfect for the white theme of this week's Gallery. But who needs to see just another chilly photo? I want to be reminded of sunny summer days. I need something to look forward to. So here is my back garden today and twelve years ago, with my little girl in her favourite white dress Happy memories :D

I don't suppose she'll ever wear a dress like that again unless she gets married!

Friday, December 3, 2010

11 am: she
makes waffles, and offers them to CD. This is great because I'd been
trying to persuade him to eat breakfast for 3 hours. We chat. No really, she still seems to like talking to me.

I leave to dig the car out of the snow and go to
T*sco, leaving her in charge and chatting to Smiley. Normally Smiley
comes to the supermarket with me, but wheelchairs and ice do not mix!

12.30 pm: I return with the shopping and drop heavy hints about needing some help.

1.30 pm: Angel empties the dishwasher.

1.35 pm: She goes back on the laptop.

2 pm: She pulls on the wellies and heads out into the back lane.

2.15 pm: She comes back in and asks CD if he would like to come out and play.
Then she actually goes and finds his wellies for him :)

They go out to play in the snow....

2.45 pm: They dash back into the house scattering snow on the hunt for coal, buttons and carrots, I wonder why?

Ah ha!

3.15 pm: She's cleaning out and laying a fire.

3.30 pm: Studying in front of the fire with the laptop for company.

6.30 pm: A brief appearance in the kitchen for dinner.

7.30 pm: Her friend arrives. The books are put away.

7.45 pm: They raid the fridge for the first time.

11.15 pm: Time for sleep.

So why am I boring you with all this? Well, thanks to the disaster
that is the Irish economy, Angel and one of her friends are now planning
to go to Australia next September, along with 1 in 3 of her age group, as reported here. If it happens, my little family
will be broken up much earlier than I expected. How will we manage
without her energy and enthusiasm and affection? We would all miss her
terribly. Is it selfish to say (not to her obviously) that I don't want
her to go?

Wednesday, December 1, 2010

In case you hadn't noticed, it's snowing in Ireland. It didn't
for about ten years, and now it's snowing in November! I see snow as
a challenge...after all I live just a few hundred yards from a
gritted main road, I do not live down a snow-covered country lane, so
I feel under an obligation to get my kids to school, and in the
confusion on the first snowy day I drove them all to school, a
two-hour round trip. Normally I just wave them off from the front
door: Angel walks to school, and buses are provided for the other two
as they have special needs.

Why don't I just let the children have a play day? Well Angel has
her final school exams this year and is keen to go in unless it is
actualy closed - today it is, so she is celebrating with a lie-in.
What about the other two? Realistically Smiley is not going to be
taking any exams, and CD is only in primary school. But both of them
get so much out of school, entertainment, education and expertise
that I cannot give them at home. I'm now thinking that the right
school and the right teachers are critical to how my kids turn out.
And I fought so hard to find the right school for two of my kids,
that I feel I have to get them there....

When Angel was born I did what most Brits do and dragged her in
her pram round all the local primary schools to get her name on the
waiting list. There were no 'league' tables or 'whole school
evaluations' in the early '90s, you found out about schools
from other parents, and made totally biased decisions based on
whether the pupils look well behaved and nicely turned out.

In the end, it was events that decided where she went to school:
Smiley's birth and complex care needs meant that Angel went to the
school across the road. It was pretty good and she was sad
to leave, and made a great bunch of friends who all moved smoothly
together as a group to secondary school. Again I looked at lots
of secondary schools and decided on this one because:

1. It has good academic results, is inclusive and
'free' (in Ireland free means you still pay for books,
uniforms, photocopying and other charges, a 'voluntary' contribution,
school trips and a few things I've probably forgotten).

2. There are no boys.

3. The girls are not allowed out at lunch time (to meet boys for
example...).

4. It's run by nuns, well kind of. So it's fairly
strict.

She complains of course, but how many 18 year olds really love
school? She should do well in her exams - including Maths - and I can't really ask for more than that :)

Smiley off to school in the snow

It all got a bit more complicated when I started looking for a
school for Smiley. At first she attended a pre-school for kids
with physical disabilities, but it was clear from the start that she
was behind the other children - though much more expressive and
curious than some. After two years it was suggested that we
find a more appropriate school for her and about the same time we
found out (yes, I worded that very carefully) that she had been
assessed as severely handicapped. I was not at all happy with
the service that she was referred to as I mentioned here, but I was
told over and over that there was no alternative. I rang other
schools that catered for children like Smiley, but she was outside
their catchment area, and they already had long waiting lists.
I pestered the Department of Education. I was told there were
no schools in my area. I was told that there were no
'schools' without teachers. We thought about moving house ...
again. We went to court, which I may write about, very
carefully, one day. In those pre-Facebook days I was endlessly
on the phone, and finally someone mentioned a school attached to a
home for children with disabilities that was just starting to accept
day pupils. When I rang, the principal said he would love to
see Smiley. I was very nervous on that first visit, I so wanted
it to be perfect. And while perfection is probably impossible,
this school is everything I would have hoped for, except it's ten
miles away! The wonderful teachers ensure that the children are
educated at a level appropriate to them, and they have access to all
the equipment and therapy that they need. It's true that Smiley
hasn't made the progress that I would have liked, but at least she
had the best opportunities that I could give her.

I've written about the big decision to move CD from mainstream
school to an outreach unit here, and once again, I think it was the
best thing I ever did. He is a different child and I
feel so hopeful about his future now. So snow or no snow, he's going
to school.

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